Sunday, August 21, 2016

Not a Competition

For the past couple of weeks, people around the
world have been watching the 2016 Summer Olympics.Even if we don’t watch the actual games, we’re
bombarded with news articles and social media posts praising all the record
breakers and medal winners.We admire
the athletes’ competitive spirit, and root for our favorites (or our country)
to win, win, win.

That drive to be the best, the fastest, the
most, the everythingest carries over
into other aspects of life, and that’s not always a good thing. It’s not just about being the best we can
be, it’s about being better than someone else (or everyone else) – surpassing the Joneses, so to speak. While
some simply take this inspiration and strive to do better, far too many
minimize other people’s accomplishments in order to make themselves feel
superior. When taken too far, this can
give the impression that whatever we do in life, if we’re not The Best, it’s not good enough. That we’re
not good enough. And it completely
negates the value of our effort, dedication, and accomplishment.

Oddly enough, there seems to be a similar competitiveness
when it comes to bad things, as well.
Far too often when we are dealing with a difficult or challenging
situation, instead of simply offering sympathy, people feel the need to state
that their own crises are worse (whether that’s actually true or not).

Oh, you sprained your ankle? I broke my toe last year – now that was painful.

Oh, you lost your job? I didn’t get that promotion I was hoping for –
it’s so unfair.

Oh, you’re getting divorced? I still haven’t met anyone on match.com.

By suggesting that their suffering is worse than our
suffering, what they are really doing is shutting down the conversation,
preventing us from complaining, venting, or just talking about our problem.

Sometimes these conversation stoppers come
even without specifying another person who “has it worse.” I really want to believe that they come from
a misguided attempt to make us feel better (what I often refer to as "they mean well, but ..."), but these statements – said more
times than I can count – tend to minimize our suffering, to invalidate our
feelings.

At
least it’s not cancer. This is probably the one I’ve heard most often
(especially since I used to work and volunteer for a cancer-fighting organization). It may be true, but that doesn’t mean that our illnesses aren’t bad, too. Yes, cancer can be
terrible, but it can also be eliminated.
We all know someone who has had cancer … and we all know someone who has
survived it – someone who is cancer free
now. There is no cure for many chronic illnesses,
no surgery to remove the bad parts.
Dozens of medications every day can only attempt to reduce the symptoms …
and often, they’re not very successful at that.
Millions of people with chronic illnesses will never be free of them … so this really doesn’t
offer much comfort.

At
least it’s not terminal. Just like above, this is an attempt to say “see, it could be worse” – in the “bad
illness” competition, we did not “win.” But
there are two major problems with this response. First, our illnesses may not kill us, but they will leave us living with excruciating pain & debilitating fatigue for the
next 40 years or so. Is that a life you
would ever wish for yourself or someone you love? It’s really not a consolation to us. Second, though I try not to think about it
too often, the reality is that these illnesses could kill us. Sarcoidosis is already in my lungs, and can
affect the liver, heart, or brain. The Bernie Mac Foundation was
started after he died from it. Many
autoimmune and inflammatory, diseases can affect any organ or system, including
the ones we need to survive.

At
least you look good/But you don’t look sick. I know it sounds like a compliment … but
really, these statements belittle the experience of people suffering with
invisible illnesses. They imply that we
can’t really be that sick, because it
doesn’t show (though the extra Prednisone pounds, the rashes, the swelling, and the bags under our eyes would disagree), or that the suffering doesn’t matter
because what’s more important is our outward appearance.

Now I’ve always been a glass full kind of
girl, always looking for the silver lining in any cloudy situation ... but there’s a big difference between us choosing to focus on that, and someone
else telling us to. When patients like
me choose to focus on the things we still can do rather than the ones we can’t,
it’s a coping technique. We can’t allow
ourselves to be miserable all the time, even if we’re sick and tired and
hurting all the time. But when we do
focus on the pain – either because it’s an especially bad flare day or to
explain what we’re going through – it’s because we need to. Even if what we’re going through is not The Worst, it’s still bad, and we are
entitled to feel upset about it. But
when our friends, family, and coworkers make statements like these, they suggest
that we don’t have that right, or at least that they just don’t want to
hear about it.

What’s especially sad is that this type of thinking
seeps into our subconscious, and leads us to feelings that we know we shouldn’t
have. We start to question our own right
to feel bad about our situation. How can
we complain? After all, other people
have it worse.

At least I haven’t had any joint
replacement surgeries (yet).

At least I haven’t had to be hospitalized
from this (yet).

At least I’m able to walk (most of the
time, with a cane or a rollator, for relatively short distances).

A friend was in a car accident, so how dare
complain about needing a walker when she had to use a wheelchair?

Another friend was in the hospital with
heart complications, so how dare I feel miserable about the pain in my arms,
legs, & back?

How could I miss xyz event just because I’m
in pain? There are stories on TV all the
time about people who do so much more after overcoming so much worse!

The thing is … we know
that kind of thinking is not fair. We
would never stand for someone we care about thinking that way about herself,
and would be infuriated if someone else dared to say these things to us. But it’s so easy to feel worse and worse about
ourselves, and then blame ourselves for feeling that way. We look at other people, and think about what
we “should” be doing, how we “should” be feeling, based on what they do.

But here’s the thing: it’s not a competition.

We all experience pain and sickness
differently, and we all have different ways of coping with it. Sadly, there is no finite amount of suffering
possible in the world at any time, so one person’s misery does not lessen any other’s. (Fortunately, there’s no finite amount of joy
either, so one person’s happiness does not diminish anyone else’s either.) If we haven’t eaten all day and we’re hungry,
that doesn’t go away just because there are people starving around the
world. If we lose a loved one, it doesn’t
hurt less because it wasn’t part of a mass shooting. And if we are feeling the pangs of the
reality of our illness, it doesn’t feel better because there are other health
concerns in the world.

It’s time to stop looking to others to
determine how we should feel. Sick or
well, happy or sad, grateful or full of self-pity … we need to learn to trust
ourselves. Our feelings – whatever they may be – are valid, and not based on anyone’s
experience but our own. We can feel sad
for someone who is suffering while still recognizing that our own situation is
less than optimal. How we feel about –
and cope with –our own circumstances may be different from day to day, and
that’s OK too.

All we need is love!

It’s not a competition.
There’s no prize for the person who suffers the most, and no reason to
compare what we’re feeling to anyone else.
Most of all, there is no need for any judging – not from anyone else,
and most of all, not from ourselves.

Meet the Buttahfly

About Kerry

​I'm a glass-half-full kind of girl. More than that, really - I'm the girl who'll point out that if it's not full, you don't have to worry about spilling your drink every time you pick it up!

I am extremely fortunate to be married to my best friend - the boy next door I had a crush on since I was a child. Though we've been married nearly 17 years, people who meet us still think we’re newlyweds … and in a way, we still are! Through thick and thin, sickness and health, he has been my rock, my anchor, my greatest source of strength and support.

Over the past few years, I've been diagnosed with a number of chronic, autoimmune, and invisible illnesses (see What’s Wrong for the details). Still, I do the best I can to stay positive: this blog is my way of showing those with similar experiences that they are not alone. We may not be able to beat (cure) our diseases, but we can make sure they don’t break our spirits. At the same time, I’m hoping to educate our friends and family – those who want to be there for us, but don’t really understand the extent of our illnesses and how severely they affect us. With a little help, we can get through anything … together.

It's my mission to make a difference in people's lives, and I encourage everyone to do that in whatever way possible. A positive word, a helping hand, a donation (of time or money) to a worthy cause, even a simple but genuine smile can mean the world to someone ... and that someone could be you!

🎶We're Jinglin', Baby!

On December 9, I'll be jingling my bells at the Arthritis Foundation's Jingle Bell Run. Join us if you're in the area ... or support our efforts with a donation. Anything you can do would be greatly appreciated!

The Mighty

I've recently had a number of stories published on The Mighty, an online magazine of sorts for people with chronic illness. View my author page (and published pieces) here.

2017 WEGO Health Awards: Patient Leader Hero (Nominee)

“Sometimes the connections we make in online communities go above and beyond, truly changing our lives for the better.” This award recognizes those Patient Leaders “whose content has opened your eyes to seeing things differently … whose dedication has ignited the advocate within you to make a change … whose work has effected change for their community members. This Patient Leader's influence truly has the impact to make a difference. They're nothing short of a hero.” I am truly honored to be nominated.

I Did It!

Every day in April 2014, WEGO Health provided a prompt, and my posts here reflect my responses to those ideas, in terms of living with chronic illness(es). It was a great experience that inspired me to write more, enabled me to “meet” other bloggers and friends, and empowered us all to share our experiences in a unique and creative way.